I was diagnosed with MDS in May 2025. Have been told no treatment yet as blood levels staying up. I attend Belfast hospital. I completed treatment for AML last year. I am well at the minute. Anyone in a similar situation. I find not getting treatment...
I was recently diagnosed with primary myelofibrosis after a positive Jak 2 test at GP surgery led to referral to haematology and bone marrow biopsy. I’ve just started hydroxycarbamide and the specialist will monitor my blood to check if it is helping...
Hi everyone I’m new to the group so I’m sorry if I’m posting this in the wrong place. My GP thinks I might have Thrombocytosis (he did mention Essential Thrombocytosis at one point). I’ve got a Clinical Haematology hospital appointment in November....
As someone who has been 'fobbed off' by GP's in the past only to go on to have a couple of major surgeries - not MPN related - I am very particular about asking questions at consultations with my haematologist. I thought one of the four 'gold standards...
Can anyone advise whether I should be able to have the shingles Vacinne. Can anyone advise whether I should be able to have the shingles vaccine on the NHS? I believe that currently the NHS are giving it to those turning 65 and those aged between...
Hi, I’ve just recently been diagnosed with JAK2 and ET. I am confused with the conflicting information I have received. In the booklet I was given on MPN’s it states bone pain as a common symptom however when spoke to my specialist they said bone pain...
in response to tvman I am attending City hospital. My bloods have never been right since I finished chemotherapy for AML. I have been getting lots of infections caused by low white cells so it seems my MDS is affecting my white cells mainly. I am on...
Hi, I have just joined the group. I am a 36 year old mother of 2 girls. I was diagnosed at the age of 16 in December 2004 (20 years ago) with ET. I was under quite a few amazing haematologists, how my last one died during Covid in 2020 and I haven’t seen...
Hi everyone I have been on ruxolitnib now for over 3 years. Its making me anaemic as well as causing fatigue. I'm struggling with the fatigue as it's have a big impact on my daily life. Had to go on ruxolitnib as I have PV and the itchy skin was unbearable...
My wife is 12 days away from her second stem cell transplant. In 2020 after being diagnosed with Multiple Myeloma she went through an autologous transplant with chemo maintenance over four years. Then on a routine visit with her doctor we were informed...
